Tuesday, October 8, 2013

My Absence

I just realized that it has been almost an entire month since my last post. Things have been busy to say the least. Since we got the diagnosis for Giovanni, life has been a total blur. I will do my best to bring everyone up to speed.



Shortly after his initial diagnosis following the MRI, we were contacted by his neurologist regarding the results. He said that he had a few of his colleagues, current and former, take a look at the images from the MRI. While they all agree on the periventricular heterotopia, they did not agree that what we were seeing was a simple choroid plexus cyst. The consensus was that the area in question was something called Porencephaly. Porencephaly is a very rare disorder of the central nervous system in which a cyst or cavity filled with cerebrospinal fluid develops in the brain. Children with porencephaly may have poor or absent speech development, epilepsy, hydrocephalus, spastic contractures, and mental retardation.The prognosis for children with porencephaly varies according to the location and extent of the cysts or cavities. Some children with this disorder develop only minor neurological problems and have normal intelligence, while others may be severely disabled and die before their second decade of life.

The doctors believe that the Porencephaly developed because of a stroke that he had in utero...the think. If you remember, right around the 34 week mark, I was rushed to L&D as Giovanni was not moving and he failed two NST and BPPs in a row. We believe that this is when he possibly had a stroke.

Given everything that has happened, I would say that Giovanni is doing quite well. We have known from the begninning that something was wrong, but now we have some answers. He currently receives PT, OT, and speech therapy every week, and we have a special neuro educator that comes to our house every other week to check on his development. Right now his biggest challenges are speech, fine motor skills on his left side (from the left sided hemiparesis), and sensory integration. As far has his speech goes, well, there isn't any. We had a period where what babbling he did have completely subsided...for a period of about 6 weeks. His babbling is coming back, but he is where he was 5 months ago with speech. They have tried signing and the PECs system, but he is not taking to it. The therapist said he is lacking some major skills that are needed to develop his language so she is working on that with him. The physical therapist noted that he had problems with his feet and legs. When he stands and walks with his walker, his feet pronate, his toes curl, and he walks on his toes. She also noted that he has a bit of a left leg drag. He was fitted for foot and ankle braces last week and we are hoping that they will be here soon. They are going to reassess his walking once he gets the braces, and if his left leg still drags, they are going to give him a leg brace for the left side.

The other unfortunate part of this is that Giovanni has recently started having seizures. This is something very new for us so we are still trying to process it. With everything that has happened over the past couple of months, our neurologist at the medical center has decided that we need to be seen at Children's Hospital in Boston. The neurology group at the medical center has only seen one other case of heterotopia and they have never seen Porencephaly before. We are leaving for Children's next Monday. I am not sure what they are going to tell us but we are keeping the faith and praying like crazy.

I have mentioned this before, but I have a page on Facebook where I post frequent updates about Giovanni. The page is called Giovanni's Journey so feel free to follow it.



Monday, September 9, 2013

First Birthday Party

Wow, I can't believe it has been almost three weeks since my last post. Things have been so crazy. Between Giovanni's 1st birthday party, coordinating services for him, working, and trying to find time to emotionally process of everything, I haven't had time to do much else. I won't go into detail about what is going on with Giovanni as I have created a page to keep everyone up to date. It is called Giovanni's Journey. You can visit this page to get updates on his progress. So, instead of focusing on all of the negative stuff, I am going to devote this post to something happy...his birthday party.

I will be the first to admit that his party was over the top. I really enjoy party planning to begin with so going overboard wasn't hard to do. I also realize that this was only a 1st birthday and that he won't remember it nor did he understand what was going on, but this was a celebration of his life and the journey to get him here.

The setting for the party was at our local golf club. Since I didn't want to go too fancy, we decided that we would have it outside in the wedding tent and do a fully catered barbecue. It was so nice having someone else do the setup, the cooking, and the cleanup, as I really was able to devote my time to Giovanni and our guests.

Giovanni is OBSESSED with Mickey Mouse so the theme was a no-brainer. In the pictures you will see a slew of decorations and I would like to point out that I made them all! Just call me Martha-Freaking-Stewart!



 (the banner I made using foam sheets and card stock)

 (the goody bags)

 (these ears I made for the kids were super cute, but a super pain to make!)



 (I made these centerpieces using clay pots, Styrofoam balls, and lots of spray paint)

 (the party tent all decorated)

 (the cake-vanilla with strawberry filling in the one layer and banana filling in the other)

(the birthday boy)

 (trying to get him to wear his ears but he was having no part of it)

 (my husband and I in the "Mickey" spirit)





(such a happy boy!)


Thursday, August 22, 2013

A Letter to My Son



Giovanni,

I am completely filled with emotion as I sit here trying to figure out what I want to say to you. It is so hard to believe that you have been in my life for an entire year. It seems like just yesterday I was bringing you home from the hospital, worrying if I could ever be the mother that you deserved. This last year has truly been the most amazing year of my life. I can honestly say that it has been the first year that I have felt that my life truly had meaning and purpose. The void that I once had in my heart is now filled by love and joy.

Over these last couple of days I have been reflecting on the past. Though my life is now filled by you, it is hard not to think about and remember the journey we embarked on to get you here. While it was one of the most difficult things I have ever had to face, I can tell you that I would do it all over 1000 times if I had to, just to have you in my life.  

I know that you won’t ever remember this, but you and I had a talk while you were in my belly. The April before you were born, you tried to come into this world. Although I was excited to meet you, it was much too early for this world to be blessed by your presence. The doctors told me that you may be leaving me to go and fly with the angles. That night, after daddy left the hospital to go home, you and I had a little talk. I told you that I needed you to fight hard to hold on because I needed you in my life. I told you how much I loved you and how I had been waiting for you for a really long time. I told you that I would fight for you and that I would never give up on you. From that moment on, you and I fought as a team. We had a bond that could not be broken. You obviously heard my words and felt my love, as you defied the odds and held on, blessing the world with your life on August 22nd…the happiest day of my life. 



From the moment that I first held you in my arms, I could see your personality shine through. It has been incredible to watch your personality continue to develop over this past year. You are the most bright, funny, and entertaining little boy that I have ever known. When you laugh, your eyes sparkle like nothing I have ever seen before. It is almost surreal, like your soul is shining through. It is absolutely angelic.

As we are getting ready to start your second year of life, I can’t help but think of all the amazing days that we have ahead of us. I know that we will be faced with some challenges, but as I have said before, there isn’t anything that we can’t get through. I have known from the moment I met you that you were a fighter. You have a plan and there isn’t anything in this world that is going to get in your way. You continue to amaze me with your strength and determination. Even though you are just a little guy right now, I can tell that there isn’t anything in this world that is going to get in your way.  

Giovanni, I want you to know how much I love you. I am honored to be your mom, and I will do everything I can to make sure that I am the mother that you deserve. Thank you, Giovanni, for showing me what love is and how beautiful this world can be.



Love you baby boy!

video

Sunday, August 18, 2013

MRI Results

First of all I just want to thank everyone for all the care and concern that you have showed me, whether it has been via comments or private messages. My husband and I are hanging in there, but there is an awful lot to digest and it is going to take a while to adjust.

On Wednesday we went for the MRI of his brain. Since he is so young, they had to put him under general anesthesia to prevent him from moving during the imaging. The entire process took about three hours. Once he was awake and the nurses observed him for a while, we were free to leave where we would have to wait until our follow up with the neurologist 12 days later to get the results. At exactly 4:39pm that afternoon the phone rang when I noticed on the caller ID that it was the hospital calling. I figured that they just wanted to check in to see how he was doing, so I was a bit taken back when I heard his neurologist’s voice. The first thing he asked me is if I was home. When I told him I was, he asked me if I was alone or if my husband was present. My heart immediately sank as I knew something wasn’t right. He obviously heard the panic in my voice as he asked me to sit down as we needed to talk about a few things. He then proceeded to tell me that Giovanni’s MRI was abnormal. He said that he didn’t want to go into great detail over the phone but I demanded information. He gave me a quick rundown of the findings but asked us to come in so we could go over everything together. Luckily we were able to get in the morning of the 16th.

Giovanni was diagnosed with periventricular heterotopia. It is a condition in which nerve cells (neurons) do not migrate properly during the early development of the fetal brain, from about the 6th week to the 24th week of pregnancy. Heterotopia means "out of place." In normal brain development, neurons form in the periventricular region, located around fluid-filled cavities (ventricles) near the center of the brain. The neurons then migrate outward to form the exterior of the brain (cerebral cortex) in six onion-like layers. In periventricular heterotopia, some neurons fail to migrate to their proper position and form clumps around the ventricles. There are many subtypes of periventricular heterotopia, each having different implications. The type that Giovanni has been diagnosed with is posterior dominate periventricular laminar heterotopia, unilateral. This condition is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH) as it affects less than 200,000 people in the US population.

This condition is affecting the right side of his brain, including the motor cortex. With the area of the brain that this condition affects, most diagnosed with this disorder (>90%) develop epilepsy, where in some cases the seizures do not respond to medication and only drastic measures (frontal lobe resection) can help control the seizures. While most with this condition are of normal intelligence, there are some intellectual challenges, namely dyslexia, reading/spelling difficulties, and occasionally, the inability to speak. The other piece of this is that there are several causes of this condition. It could be a big fluke or there could be a genetic component that is causing this. If this is genetically based there are several other problems that could arise.

It was also discovered that he has a cyst type structure in his brain. It was originally thought to be a large choroid plexus cyst in the lateral ventricles, however, this morning I received an email from the neurologist with a bit of a different theory. He said that after extensively reviewing the images with his team, they feel that what they are seeing is a porencephalic cyst.
He said that there is no reason a region of heterotopia should be located next to a choroid plexus cyst so they think the most likely thing is that the cyst is not a choroid plexus cyst but rather a porencephalic cyst. This type of a cyst is normally formed as a result of an injury to the fetus during the later stages of development (2nd or 3rd trimester). One of the most common things to cause such a cyst is small intrauterine stroke. The circumstances of the pregnancy certainly would support such a possibility. What he suspects is that Giovanni had a migrational abnormality (the heteroptopia) which caused that region of the brain to be abnormal in form and structure. Due to this, that abnormal region of the brain was more prone to be affected by the rigors of the intrauterine environment and suffered an insult - likely an intrauterine stroke - which caused part of that region to degenerate and form a cyst. In other words, Giovanni, in addition to the heterotopia diagnosis also now has Porencephaly, an extremely rare disorder of the central nervous system (I will elaborate in a future post). 
 
We are currently waiting for insurance approval for testing so we can begin to get some answers. In addition to a repeat MRI, he needs to have an EEG to get a baseline read and also to see if he is currently having seizures, an echocardiogram as sometimes the heart can also be affected by this, and the first series of genetic testing to determine if there is a genetic reason for this condition. Once this testing is complete, his local neurologist will be sending us to Children’s Hospital in Boston as they have a physician there that is very familiar with this condition. He is also scheduled for a video fluoroscopy on the 26th to assess his swallowing to see if we can get some answers as to why he is still choking. While we patiently wait for these tests to be scheduled, he will continue to receive his private physical therapy in addition to the therapies provided by Early Intervention. All we can do right now is take things one day at a time. 


If anyone is interested in following Giovanni's Journey, I have created a Facebook page where I will post updates about what is going on with him. Feel free to like and share.

Giovanni's Journey

 

Wednesday, August 14, 2013

Quick MRI Update

I am sorry that this is short but things did not go as planned today and I am not in the right frame of mind to write tonight. The MRI itself went well and Giovanni handled the anesthesia well. We were expecting to get the results in 12 days as his next neurology appointment but we got a very unexpected call this afternoon from the neurologist with some not so good news. I am still trying to process everything. I have to call in the morning to get in with the neurologist ASAP so as soon as I get more information, and I can take a minute to digest everything, I will post another update.
Thanks for understanding!

Monday, August 5, 2013

Another Year Gone By...

With today being my birthday, I thought that I would take the time to reflect on this past year as so much has happened.

By far the most amazing thing to happen this year was the birth of my son, Giovanni.


Being a mom has changed my life more than I could ever have imagined. I never knew that it was possible to love someone as much as I love this little guy. The type of love that I feel for him is different than anything else I have ever felt in my life. The only way that I can describe it is as this overwhelming, heart-exploding, obsessive type of love. Everything I do, even the smallest things, is for him and his future.

 (us at the horse races)

As most of you know, Giovanni was diagnosed with Cerebral Palsy a few months ago. This diagnosis has completely turned my life upside down. After struggling for years with infertility, multiple miscarriages and complications, and then being plagued with a very complicated pregnancy and birth, I guess I just kind of figured that the easy life was coming. I mean, how much worse could things get?

Although I have a lot of unexplored feelings about his diagnosis (anger, fear, resentment), I also have a lot of hope too. All of the stuff I went through to have him has prepared me for this as I have become one strong mama. If anyone can handle this, I sure as hell can. Because of all the grief, pain, and heartache that I had to fight through, I am now prepared to take on anything. I was given Giovanni for a reason. This is how it was meant to be.

(my little beach bum)

(he LOVES to swing)

One important thing that I have learned this year is to let go...for the most part. All my life I have always been tightly wound, having the need to have complete control over everything in my life, including my immediate environment. This, in turn, has made me quite high-strung, high-maintenance, and very stressed. Giovanni has taught me that it is okay to let go of some of that as life is too short not to have some fun.


The other thing that I have realized, and this is a relatively new concept for me, is that we must live life in the moment. Just the other night as I was putting Giovanni to bed, I noticed that he was quite clingy. Every time that I tried to lay him down, he grabbed on to me and put his head on my shoulder. I stood there, holding him, singing softly in his ear. I started thinking about all of the things that I needed to get done so I needed to get him to bed. As I went to go put him down for the third time, he lifted up his head and gazed into my eyes. It almost seemed that time had stopped and I was seeing him years down the road as he wasn't a baby anymore. I quickly shook my head in disbelief and I was holding my baby again. It was right then and there that I realized how fast life is going by and that I would never get back the time that I have with him now. Once the moment is over, it is gone forever. The decision to stay with Giovanni and hold him as long as he needed me to was an easy one. One of these days he will be grown and have a family of his own, and I will be thankful that I stayed and held him until he fell asleep that night.

Monday, July 22, 2013

Going Public

About a month ago I was contacted by Fertility Authority, a prominent online resource for infertility information, and asked if I would be willing to write articles for them on a monthly basis. I was more than happy to oblige. I struggled with a topic as I wanted to keep it true to who I am, yet be as informational as possible. Today my first submission was published. I wanted to share it with everyone as I was hoping to get some feedback. I would also love suggestions for future topics.

This month I focused on Preimplantation Genetic Diagnosis (PGD), and more specifically, Array-Comparative Genomic Hybridization (aCGH). Here is the link to my article:

Preimplantation Genetic Diagnosis (PGD) and Recurrent Miscarriage: My Personal Experience

Thanks for your support!


Tuesday, July 16, 2013

Early Intervention: The Assessment

Today Giovanni had his evaluation by the Early Intervention team. Present was our Service Coordinator, a Speech/Language Pathologist, and a Physical Therapist in addition to myself and my husband. The first 20 minutes or so was all about my pregnancy as well as the labor and delivery process. I had to fill them in on all the complications that I had during my pregnancy, his traumatic birth, and then all of the issues we had since his birth. I never realized how much has happened since he was born, but this served as a great reminder (note the sarcasm).

The next 40 minutes was devoted to the evaluation itself. They asked me a ton of questions about things he can/can't do. They also interacted with him using toys and also just observed him for a while. They kept telling me that he was such a bright boy. I couldn't have been more proud!

The next 30 minutes was going over the Individualized Family Service Plan (IFSP). Since his diagnosis automatically qualifies him for the program, we did not even need to discuss whether or not he was to receive services. The first thing that they did was to go over all of his scores on their evaluation.

  • Physical Development was assessed using the Peabody Development Motor Skills )PMDS-2). This evaluates both gross motor skills and fine motor skills. His Gross Motor Skill quotient was 98 and his Fine Motor Skill Quotient was 100, with a Total Quotient of 98. The average range for this is 90-110, so Giovanni scored smack dab in the middle of normal.
  • Communication Development was assessed using the Preschool Language Scale-5 (PLS-5). His score was a 92 and the average range is 85-115.
  • Cognitive Development was assessed using the Bayley Scales of Infant Development (BSID-III). He scored a 105 and the average range is 85-115.
  • Social Development and Adaptive Development was assessed using the DAYC. Giovanni scored 97 on the Social Development and 89 on the Adaptive Development tests with the normal range being 85-115.
The one area that they definitely saw an issue is the coordination within his motor skills. He is very rigid and spastic with his movements, with his reflexes being VERY pronounced. Again, we had the possible need for leg braces mentioned as he is a toe stander and his stance is a bit awkward. I know that some of this is normal, however, they said that the extent to which he does it is not. They also noticed that with his spasticity that he had some difficulty doing intricate movements with his hands, but this is not anything we didn't already know. Although they didn't observe it, his difficulty swallowing thinned liquids was also discussed in great detail.

It was decided that Giovanni is going to receive physical therapy weekly at our home. While they know that he is going to need a speech/language pathologist to work with him as well, they will not treat him until he has a video fluoroscopy to assess his swallowing. We will be calling his pediatrician tomorrow to get that scheduled as it has to be done down at the medical center.

Speaking of which...we got the call today to schedule his MRI...something I was hoping to hold off on until after his birthday. Unfortunately they could not do that, so his MRI is scheduled for August 14th. He will be put under general anesthesia and I am so nervous! The one good thing is that we may have some answers as they also moved our follow up with the neurologist to August 26th from the end of September. If anyone has any experience with a baby/toddler going under general for an MRI, I would be happy to hear from you! 


Wednesday, June 26, 2013

Early Intervention: The Intake

So this afternoon we had our first meeting with the Early Intervention Program. One of the Service Coordinators, who happened to be a RN, came to the house to discuss Giovanni's participation in the program. The one thing that I learned is that with a diagnosis of CP, he automatically qualifies for the program. Now this doesn't mean that he will have to use the services, but if we want to we can.

For those of you who may not now, the Early Intervention Program is a statewide program that provides many different types of early intervention services to infants and toddlers with disabilities (birth to age 3) and their families. It is led by the Department of Health. This is a program that every family has access to and it is not based on income. Some of the services that they are offer include:
  • assistive technology devices and services
  • audiology
  • family training, counseling, home visits and support groups
  • medical services for diagnostic purposes
  • nursing services
  • nutrition services
  • occupational therapy
  • physical therapy
  • speech-language pathology
  • vision services
  • special instruction
  • health services
I was very surprised to learn that there is no cost to us for this program as it is a State mandated program. They try to bill the insurance for some reimbursement but since my health plan is a national plan, it does not have to adhere to New York State Insurance Law, therefore they will not reimburse anything. This kind of made me feel bad considering how expensive the insurance is to carry!

The next step is the evaluation. For our specific evaluation a physical therapist and a speech-language pathologist with come to the house to assess Giovanni since those are the areas where we have the most concern. I should hear by Friday when that will be.

I am not quite sure what to think about all of this. If anyone has any experience with an Early Intervention program, I would love to hear from you! 


Sunday, June 23, 2013

Thank You

Thank you to everyone who commented on my last post, and to those of you who sent me private messages as well. If you are just "tuning in" you can click here to be brought up to speed.

Since being given the news of his diagnosis, I have been flip-flopping back in forth with being angry, sad, and hopeful. I am dealing with the sadness as best I can. The anger is a different story. I think the problem is that I don't know who, or what, to be angry at. I am angry that more shit has been thrown at me. With everything that I have had to endure over the past 4 years, isn't that enough? Don't I get a break?

I am also confused about who to be angry at. The neurologist told me that the brain injury either occurred in utero or at birth. If it occurred in utero, is this my fault? Did I force my body to go against its abilities and create a child? Were all those assholes who told me that maybe I wasn't meant to be a mother, (referencing my infertility) right? Did I fail Giovanni? Typing those words make me want to scream and throw up at the same time!

I also keep playing his birth over and over in my mind. I wanted a c-section right from the beginning. My immunologist sent a letter to my MFM suggesting that I have a c-section. They insisted on trying a vaginal birth so I just went with the flow. Is this my fault for not advocating for my unborn child and demanding a c-section. All I can remember is looking over my oxygen mask and seeing the look on the MFM's and Resident's facees. I remember the MFM yelling at me that I couldn't stop pushing as we had to get him out now. I will NEVER forget the look of panic on their faces. I will never forget hearing the words "we don't have time" in reference to moving me to the OR for an emergency c-section. I will never forget the feeling as the NICU nurses whisked Giovanni away from me. All I could do was scream the words "is he okay" over and over again, while no one answered my screams. The few minutes that he was away from me felt like an eternity. I thought that I lost my baby boy.

Is this my fault? Could I have or should I have done something different, something more? I will never forgive myself.

Wednesday, June 19, 2013

Breaking the Silence

I have been going back and forth about sharing this information on my blog. There was a part of me that wanted to keep this private but there was that part of me who knows that I have always been blatantly honest on here and that my honesty has helped others in the past who have struggled through similar situations. The latter is why I decided to share. Here it goes...

During Giovanni's birth we experienced many complications. For the full story click here. To sum it up, Giovanni got stuck in the brith canal for a prolonged period of time which caused some significant decelerations in his heart rate. His heart rate was in the 60's and would decelerate into the 40's with each contraction. To make a long story short, we didn't have time to go to the OR so they ripped me open and yanked him out (sorry for the visual). He was whisked off by the NICU team into a private room where it took a while for us to know what was going on. While he didn't need to be resuscitated, it took him a little while to cry and things were pretty scary. I don't know what his first APGAR score was, but the second one was a 9 which was very reassuring...at the time.

Since about a week old, I starting noticing these jerky movements. If he wasn't conscious during these, I would have thought that he was having seizures. Our pediatrician even picked up on this, mentioning it on several occasions, but always chalked it up to an "underdeveloped nervous system". As time went on we started noticing other issues. Feeding was a big problem. He was readmitted to the hospital as he was losing too much weight. He was choking while breastfeeding and even choking on preemie nipples when he had a bottle. We noticed that his head was hyper-extended to the upper right side. He was diagnosed with torticollis, but we weren't convinced that was it in its entirety...nor was his physical therapist.

As time went on he started to develop other odd things despite the fact that he was reaching all of his milestones at appropriate times. We noticed that his left arm seemed to get "left behind" quite a bit and when he would rake food off of his tray with his hands, he would get the food into his left hand and that is where it would remain, clenched tightly in his fist.

A couple of months ago his physical therapist mentioned that while he was making progress with his range of motion in his neck, he seemed to be quite stiff and rigid, and that his overall movements were not fluid. She told me that she was going to contact our pediatrician and recommend that Giovanni see a neurologist for a consult. The pediatrician agreed.

Going into this appointment I already knew in my heart that something wasn't right, but my brain kept telling me that everything was going to be okay and we were going to be told that these were just quirky behaviors, something I refer to as Giovanni-isms. Needless to say that my heart was right.

The neurologist was quite pleased with his cognitive development. He described Giovanni as a "bright and alert" boy and even went on to point out that with his attentiveness and level of interactions, that "there is no reason why he can't get straight A's in school". I thought that was pretty funny. One could only hope.

It wasn't until he moved on to the motor part of the neurological exam that he started to note some issues. He noted that Giovanni had increased tone in his upper extremities along with increased reflexes and clonus in his lower extremities. He also noted quite a bit of "jitteriness". After the exam was complete we sat down to discuss his findings. The first thing he said was that we needed to get an MRI of Giovanni's brain. My heart immediately sank and I wanted to throw up. He said that it appears that Giovanni has suffered some type of brain injury, either in utero or at birth. The MRI would show us where the area of injury is and that will tell us when the injury occurred. Because of Giovanni's age, he will have to be put under general anesthesia. He then started going over his findings and explaining what everything meant. Then, the words I have been dreading since his first week of life were spoken. Cerebral Palsy.

While his case is considered mild it was still hard to hear. So many emotions starting running through me from sadness to anger to fear. I won't go into my whole psychological perspective on this now, but I will say that I am slowly digesting this and doing what I have to do. I will save all of that for another post.

Since I was in such shock, despite knowing in my heart that something has been not quite right all along, I couldn't make any decisions at that time. I told his neurologist that I just needed time to digest everything. He said that was fine and scheduled a follow up appointment. I am planning on doing the MRI sometime within the next couple of months. Since the MRI isn't going to change anything, I am in no rush to do it since it carries risk because of the anesthesia. When I am ready I will do it. And that is that.

No matter what, he is still my perfect little boy! I just love him so much!

    

Saturday, June 8, 2013

Officially a TAC Sister!

Last Sunday night, June 2nd, I left my husband and Giovanni for the first time ever and boarded the plane, Chicago bound. I landed shortly before 7pm and made my way to my hotel which was close to the airport. Once I got settled in, I walked across the parking lot to a TGIFridays and had my last supper.

4am came very quickly. I wanted to give myself enough time to shower and catch a cab as I had to be at the hospital by 5:45. Even though my taxi driver drove similar to the one in Rush Hour 3, I made it to the hospital alive, and more importantly, on time.


The lobby creeped me out a bit as it looked like something from a Sci-fi movie. It was like I was waiting to have an alien heart transplanted into my body. Nice, but not what I am used to.

About twenty minutes after I checked in, the greeter (yes greeter) came to bring me to the surgical waiting area. They asked me a bunch of questions, got my IV started, and got me prepped. Dr. Haney than appeared from behind the curtain. I don't know why but it was almost like a Wizard of Oz moment. I have heard so much about him that I almost idolized him. It was almost like a celebrity meet and greet.


He must have spent a good twenty minutes going over everything with me. He even told me that with my history, he was going to put in a double TAC so that my cervix would be bionic. He shook my hand and away he went. We were on our way to the OR.

I don't remember too much after that except for the fact that I yelled at the Anesthesiologist as I thought that she jipped me on the Vercid. She didn't. I was out.

I vaguely remember riding in an elevator but the first real thing I remember is that they were asking me to help them transfer me to my hospital bed in my room. I know that I was yelling at them that I was in too much pain and that when they introduced to me to the button that controlled my pain meds. Dr. Haney had ordered a PAC for me. Yay! I starting pushing it and is started alarming. That is when they told me that the button could only be pushed once every 8 minutes. Ugh! For the next 24 hours I was in and out of a drugged induced coma. They brought me something to eat but I quickly requested Reglan for nausea as just the sight of food made me want to throw up. The one good thing is that there is nothing but private rooms in this hospital so no one had to put up with me.

By Tuesday morning I was a bit more with it as they removed the Foley catheter and took away my PAC at 4am. They were supplementing me with Vicodin and Benedryl, as apparently I was breaking out in hives from them, so I was still VERY groggy but able to function...somewhat. I made the conscious decision to refuse all pain meds after 10pm that night as I knew that I had to be alert enough to navigate the airport that next afternoon. I was not a happy camper.

Wednesday around 10am I left the hospital, went for another taxi ride from hell, and proceeded to the airport. Dr. Haney suggested that I arrange for wheelchair services for the way home, so I did. Let me just say that it was the most embarrassing experience in my life. To start, they herd all the "disabled" folks to a clearly marked designated area for us...similar to a bull pen. It was full of people just sitting in wheelchairs, waiting for attendants to push them to their designated gates. The one good thing is that I got right through security without any problem. Once I got the gate, I sat in my wheelchair and popped a pain pill.

I was so happy once we landed back home. I was the last one off the plane as they had to get a wheelchair for me so the anticipation of seeing my husband and son was killing me.


This is what was waiting for me. I was so glad to be home.

The past few days have been rough. My abdomen is so distended that I can't wear any pants without an elastic waistband. Even though I am still in a lot of pain, I haven't been taking any pain meds during the day as I don't want to ignore Giovanni or my husband. I know that my husband would understand, but Giovanni would not. My husband has been awesome as he has been doing all of the physical work around the house, taking care of Giovanni's needs, and taking care of my needs. He really is the best.

Right now I am aiming to go back to work on the 17th. Dr. Haney said that I was being ambitious but we will see. The incision is pretty much that of a c-section and normally it takes 8 weeks to recover...and I am shooting for 2. We shall see I guess.

Monday, May 20, 2013

Two Weeks and Counting!

Two weeks from today I will be in Chicago getting my transabdominal cerclage placed. I know that this is the best thing for me to do but it is definitely bringing up a lot of emotions. I know that Giovanni is here, alive and well, but it makes me think of all the "what ifs."

There is a part of me that is angry and bitter. My former OB/GYN, the one who diagnosed the cancer and removed it, should have been more informative regarding how the surgery would affect my child bearing abilities. Thankfully I had a great team of doctors at the medical center that did everything in their power to keep Giovanni in until he was ready to make his appearance...and a fine jog they did!

I am not looking forward to the actually surgery and recovery, but I am looking forward to this because it makes me feel like I am crossing all my "t's" and dotting all my "i's". By having this done, I know that if we EVER decide to have another baby, my risk of preterm labor due to incompetent cervix will be less than 1%. Yay! I talked to my surgeon today to go over some worries that I am obsessing over last minute details. He assured me that everything will be fine. Since I will be traveling alone he has already told me that he will be calling my husband immediately after surgery to let him know that all is well. He will be keeping me in the hospital for 48 hours as a precaution so this means that I will go directly to the airport from the hospital. I have already arranged for wheelchair service as I will not be in any condition to cart my luggage or my ass through the airport.

One thing I am upset about is that I won't be able to pickup/carry Giovanni when I get home. Giovanni has become quite the snuggle bug lately and wants his mommy to hold him. Hopefully the recovery will go smoothly and I won't be limited for as long as they are telling me. After being away from Giovanni for 3 days that poor kid is going to get smothered!




Sunday, May 12, 2013

Mother's Day


For the past three year, Mother’s Day has been full of sadness and pain. It was a day that reminded me of all that I have lost and what was missing from my life. While I will never forget my journey to get here, I am so grateful that this Mother’s Day I am celebrating being a mom to a living, breathing baby. Happy Mother’s Day to all, to all those with their rainbow babies and to those still on the journey. xxoo

Monday, April 29, 2013

One Year Ago...

One year ago tonight I almost lost one of the most precious things that I have in my life, my son Giovanni. I remember pleading with God, begging him not to take another miracle away from me. Tonight I sit here, staring at my little miracle, knowing that I have been given the greatest gift in the world. I will never take what I have for granted. I am truly blessed!


Saturday, April 27, 2013

Where to begin...

I haven't posted in quite some time for many reasons. First of all, I have been SO busy. Things with Giovanni (I will get into that), things with work, things with everyday life. I've also been struggling on a personal level as well. I'm not sure if I am going through an early mid-life crisis or what, but I've been thinking a lot about my life and its meaning. I don't feel accomplished or fulfilled. Yes, I know that I finished my Ph.D, which was no easy task, but now what? Where do I go from here? I am not going to go into details right now about my thoughts, but let's just say that I am exploring my options. There are a few avenues that I am looking at and I don't want to make any announcements until I am extactly sure how things are going to turn out.

As for Giovanni, he is doing well but not without any bumps in the road...of course! He finally got his helmet a few weeks ago and let's just say that it hasn't been a walk in the park.

He doesn't seem to mind wearing it, but his poor head is having such a hard time adjusting to it. He sweats profusely with it on and he keeps getting contact blisters/irritation.

 

He should have been wearing it 23hrs. a day by the end of the first week, but the poor thing has been going in for adjustments a few times a week, and we can't leave the helmet on for a long time until his skin toughens up a bit. Sometimes I feel like doing this was a mistake but I know that once we get through all of these inconveniences, I will be happy about the decision to proceed with the treatment.

Other than the issues with the helmet he has been doing great. His weight jumped from the 3rd percentile all the way up to the 8th so we were very excited about that. We were, however, completely unsuccessful in trying to reincorporate dairy. We tried offering him a teaspoon of yogurt as intrusted by his Gastroenterologist, but he was sick within a couple of hours and it lasted for days. We were told to wait another couple of weeks and try it again. It could be worse though, right?





Sunday, March 31, 2013

Friday, March 29, 2013

Am I A Bad Mom?

Last Friday we went and saw the Neurosurgeon at the medical center for Giovanni's consult. The whole idea of this appointment was to rule out craniostenosis and determine whether or not a helmet was needed to help correct his plagiocephaly. The Neurosurgeon that we met with was wonderful. He was very personable and was great with Giovanni. I always get nervous seeing doctors "of that caliber" as I am convinced that they are intelligent freaks with absolutely no bedside manner as they just cannot comprehend normal human behavior. While keeping Giovanni entertained with his iPhone, the Neurosurgeon suggested that we do an x-ray to look at his skull. He did offer us a CT scan but I really didn't want to expose him to that much radiation if it was not necessary. He also agreed that if there was no sign of craniostenosis, which he suspected there wouldn't be, that it was time for a helmet as there has been a plateau in the progress we are seeing in physical therapy. Tuesday afternoon I got the call that the x-ray was all clear so we met with the place that does the helmets the next day.

His appointment with Hanger on Wednesday was pretty simple. All they did was take measurements of his head and explain the banding process. They said it would probably take 1-2 weeks to get insurance approval at which time they would bring us back to get his head scanned. Much to my surprise I got a call the next day letting me know that the insurance has decided to cover 90% of the helmet...which isn't too shabby. Today Giovanni had to go back to get his skull scanned so that they can have his helmet made.


He was such a little trooper! They had to do three different scans so it took about 10-15 minutes to complete them. I thought with the bonnet that he had to wear for the scan would absolutely freak him out but he was such a good boy! The technician even commented that he has never had a baby be so calm and relaxed during this procedure. That's my boy!

On top of all this, a few other issues have popped up. The first thing is that his physical therapist thinks that he needs to go be evaluated by a Neurologist. She is a bit concerned that his movements are a bit rigid for his age, and that he seems to favor his right side. I have been concerned about his jerky movements and the lag in his left arm since birth but his Pediatrician assured me that it was just because his nervous system was slow to develop. I have been complaining to my husband that Giovanni seems to shake a lot so my heart sank when his therapist mentioned this to us. She sent a letter to his Pediatrician suggesting that he be seen by a Pediatric Neurologist. The Pediatrician's office called me today to let me know that his doctor would like to discuss it further with us when we come in for his follow up in a couple of weeks. Now, I do like his Pediatrician, but she has a way of making me feel like a piece of shit mother. For example, when we went for his 6 month appointment she asked me if he was eating cereal twice I day. When I told her no, she snapped at me and told me that he needs to be...like I should have known this. I really wanted to limit his solids prior to 6 months as I didn't want to risk him weaning from breastfeeding, so I really wasn't pushing solids...and no one told me that I needed to. I can now only imagine what she is going to say when we go in and not only are we discussing a referral for the Neurologist, but he will also have his helmet...something she was convinced that he would never need. I guess I will have to put on my big girl panties and stick to my guns. Giovanni is my son, and while I am not a physician, I do think I know what is best for him.

To top of that drama, his Gastroenterology office called this week to check in on him. I quickly weighed him only to discover that he is losing weight! He dropped from 15lbs. 11oz. down to 15lbs. 1/2oz. This kid is eating 10oz. of amino acid formula a day which is fortified with oatmeal (total of 5tbsp), 15oz. of breast milk, 2tbsp of oatmeal mixed with 1.25oz. of breast milk and 2oz. of fruit, 2oz. of veggies, puffs, fresh banana, 1/2 slice of toast, and 4oz. of diluted apple juice (1:3 ratio)! I can't get him to take in anymore formula or breast milk, so that is why I am giving him all of those other things. If I don't give him all of the extras, he still won't take anymore formula or breast milk so this is the best way that I know how to get more calories into him. The nurse called me back after speaking with the doctor and the only advice she had to offer was to add cereal to his breast milk as well. Ugh! This poor kid shits out the top and sides of his diaper three times a day as it is and I can't even imagine what will happen to his poor little system if I up his cereal intake. I have to reweigh him next Friday and report back in for further instructions. If anyone has any experience with this and would like to offer support or would like to share their baby's menu with me, I would be very appreciative!

Friday, March 22, 2013

7 Months!


I cannot believe that my peanut is already 7 months old! Time is really flying. Just for fun, I got out some of his newborn clothes for comparison and it is absolutely amazing to see how much he has grown in such a short period of time. So much has happened since my last update. Where should I start...

Last week Giovanni had his follow up with the Gastroenterologist to see how the changes to his diet were going. Things are going quite well and he has officially broken the 15lb. mark. Although he is barely on the growth chart, he is maintaining his growth curve and the doctor said that is what we want. If you remember, I ended up going dairy free so I could continue to breastfeed, and we switched his once daily formula bottle to Elecare, which is a (very expensive) amino acid based formula...and apparently insurance doesn't pay for "prescription" formula, even when it is necessary. If he was getting the Elecare exclusively, it would be around $500 a month. Talk about motivation to keep breastfeeding! Speaking of which, I cannot believe that I have officially made it 7 months! While I pump the majority of the time, Giovanni is able to get 4 feedings from breast milk and only one from formula. Not only is it good for him, it is saving us a ton of money as well!

The other bit of news that I will share is that Giovanni was referred to a Neurosurgeon. He has been going to physical therapy for 4 months now for his torticollis and plagiocephaly, however, we are seeing only a slight improvement. While we have time for PT to help the torticollis, we are running out of time for his head to improve. Today we met with the Neurosurgeon at the medical center. He agreed the Giovanni's head was pretty severe and immediately advised us that a cranial helmet was needed. He also wanted to get a picture of his skull to rule out craniostenosis as that would require surgery. I wasn't too keen on putting him through a CT scan so the doctor agreed that we could just get a x-ray to start, and if the pictures are questionable, then we would have no choice but to have the CT scan. I am hoping to hear back on Monday. If the x-rays looked good, Giovanni is going on Wednesday for his consultation for the helmet. Apparently they have to get approval from the insurance company for the helmet, and then once it is approved he goes back in so his skull can be scanned and mapped out so the the helmet can be made. Once he has the helmet it has to be worn 23 hours a day, with an hour to wash his hair and clean the helmet. He will have to wear it for 3-6 months or until they determine that his head has reshaped appropriately. While I obviously wish this wasn't necessary, I am glad that they are able to fix the problem so that he doesn't have problems when he gets older.

So that is pretty much all that has been going on. Who am I kidding, that is enough! Now I will end with some recent pictures! Enjoy!

 (His first haircut)

 (Just chillin')

 (My little mobile guy!)

(Mr. Smiley)

(One cool dude)